Online current study into Myositis

If you have Dermatomyositis (DM) or Polymyositis (PM) and are in the USA, The Henne Group in San Francisco is doing an online study in May (dates to be determined) paying $100.
Contact Tom Mayer at (415) 348-2911 or email tmayer(at)thehennegroup.com

Do you get good support from your GP?

I just found out today from a group of women at hydrotherapy that I may be eligible for the "Care Program". They said my GP should have told me about it especially as I am falling down a bit. I have never heard of it before. I think it is the MBS Primary Care Items Allied Health Services Under Medicare for People with chronic conditions and complex care needs! Catchy name! This scheme is in Australia. Next time I visit my GP for a prescription, and this is quite often, I will be asking about this program.

Do you have anything like this available to you? How did you find out about it?

Myositis Malaise

• Malaise (/məˈleɪz/ mal-AZE) is a feeling of general discomfort or uneasiness, of being "out of sorts", often the first indication of an infection or other disease. 
• Fatigue occurs with malaise in many common diseases. 
• Malaise can be accompanied by a feeling of not having enough energy to accomplish usual activities. 
• A vague feeling of bodily discomfort, as at the beginning of an illness.

So this is what it has come too. I wake up in the morning and head down stairs for my first cup of tea and can't even pick up the cup without pain. It's like lifting a 10 kg weight! (I use to lift weights for fun!)

Photo By: Cpl. Courtney C. White                                                                                                      

This simple act of waking and getting a cuppa has different conotations for people with chronic pain and muscle disease:

1. Waking

 - realizing your body is in pain

 - trying to get out of the bed (trying may be the operative word, especially when you find it difficult to roll over or sit up)

2. Walking

- stiffness but just try and get moving

- down the stairs is an extra challenge and extra pain (think yourself lucky you can still manage pain)

3. I could go on but typing is tiring my fingers, arms, shoulder and back...

Some days I can't even make a fist

Hope you are enjoying peaceful holidays

Hope you are having a restful, safe and relaxing time. I am trying to catch up with family and friends and pace myself at the same time. Hydrotherapy classes are not being held over the holidays so I am trying other ways of relaxing my muscles and exercising my muscles.

What is the prognosis for Polymyositis?

So I needed to get real and face what might be going to happen if the immunosuppressants do not work to stop the progression of the disease. Here is what I found:
The prognosis for polymyositis varies. Most people respond fairly well to therapy, but some have a more severe disease that does not respond adequately to therapies and are left with significant disability. In rare cases individuals with severe and progressive muscle weakness will develop respiratory failure or pneumonia. Difficulty swallowing may cause weight loss and malnutrition. National Institute of Neurological Disorders and Stroke

The progression of PM and DM varies considerably from person to person. Immunosuppressants can improve strength, although not all patients respond, and relapses may occur. PM and DM can lead to increasing weakness and disability, although the life span usually is not significantly affected. About half of the patients recover and can discontinue treatment within five years of the onset of their symptoms. About 20% still have active disease requiring ongoing treatment after five years, and about 30% have inactive disease but some remaining muscle weakness. Gale Encyclopedia of Medicine

Although polymyositis and dermatomyositis are regarded as treatable disorders, prognosis is not well known, as in the literature long‐term outcome and prognostic factors vary widely.  U.S. National Library of Medicine

Classification of idiopathic inflammatory myopathies

 

1. Primary idiopathic polymyositis
2. Primary idiopathic dermatomyositis
3. Polymyositis or dermatomyositis with malignancy
4. Juvenile dermatomyositis (or polymyositis)
5. Polymyositis or dermatomyositis associated with other connective tissue diseases
6. Inclusion body myositis
7. Rare forms of idiopathic myositis:
   
   • Granulomatous myositis
   • Eosinophilic myositis
   • Focal myositis
   • Orbital myositis.

RESOURCES: BMJ

Polymyositis is what?

Just so we are clear - I have a Neuromuscular Disorder. It is an Acquired Inflammatory Myopathy, as is Dermatomyositis (DM) and Inclusion Body Myositis (IBM). It is called Polymyositis. These diseases are also called idiopathic inflammatory myopathies and are grouped together due to muscle inflammation. Polymyositis,  Dermatomyositis and Inclusion Body Myositis result in muscle degeneration and muscle weakness and are therefore also called muscle disorders.

In polymyositis the inflammatory cells of the immune system directly attack muscle fiber s.

RESOURCES: Institute for Neurological Discoveries: Neuromuscular and Movement Disorders Division: KU Medical Center: University of Kansas.

You may also be intereted in:

• Occurrence of polymyositis
• Why Myositis is hard to diagnose

Ocular myositis

Lately I have had a lot of pain in one eye and sensitivity to light. This has led me to discover Ocular Myositis which describes a rare inflammatory disorder of eye muscles. I thought I would include it here due to it containing the word 'Myositis' even though it is not associated with other forms of Myositis.

The main symptoms of Ocular Myositis are severe orbital pain and diplopia (double vision) caused by eye movement.  It can affect 1 or more of the eye muscles.  In most people there may be orbital discomfort but no additional signs of the condition.

All symptoms of ocular myositis include severe pain in the eye, difficulty moving the eye, a swollen eyelid and sensitivity to light and diplopia.

Ocular myositis may occur with other conditions such as sinusitis, cellulitis,  lymphomas and immune disorders, including "sarcoidosis, systemic lupus erythematosus, Crohn′s disease, giant cell arteriitis, and linear scleroderma." (Lacey et al 1999; Harris 2006).

Could Imuran cause Angioedema?

Imuran, or azathioprine, is what I  am taking to help with the pain of myositis. It is used to suppress the immune system. I have some new symptoms which include painful swelling of tongue, hands and feet and a rapid weight gain. I rang my specialist who said it was an unusual side affect of immunosuppressants but he thought it sounded like angioedema. I had never heard of this.

When I later explored the net this is what I found:
Could Imuran cause Angioedema? on eHealthMe which is a site that checks side effects, drug interactions, efficacies, reported by 5 million people since 1977.

On Oct, 5, 2012: 8,507 people reported to have side effects when taking Imuran. Among them, 4 people (0.05%) have Angioedema.

So this means, while quite a small percentage, some people, like me, do get angioedema when taking Imuran. I have been taking this drug for nearly a year so it is not an immediate reaction. At first I had nausea but after about 3 weeks and changing when I took the drug to the night, that went away.

Read more of my story with Imuran.

September 21 is Myositis Awareness Day

The aim is to educate the public and healthcare community about myositis.
Myositis which includes dermatomyositis, polymyositis and inclusion body myositis is one of the rarest autoimmune conditions, and affects 75,000 adults and children in the United States alone.  I personally don't really know if this is rare or not! I have searched around the net though and not found much mention of this coming weeks Myositis Awareness Day. (Maybe that is because it is rare??)

Here are the links for what I found that is happening for Myositis week in:

Australia
Sarasota, Florida, USA
USA National Myositis Awareness Day

Do you have any other links to add?

There are more things in heaven and earth

There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy
Said by Hamlet  Hamlet Act 1, scene 5, 159–167

I'm not sure if I am losing part of my brain function or